ETD for a year and 4 months.

Posted , 11 users are following.

Hello everybody, this is my first post on this forum. I'm 21 years old and I have been suffering ETD for almost a year and a half.

My symptoms include: hissing tinnitus in both ears permanently, popping/clicking when I swallow/ move my jaw and sometimes when i walk.  A feeling of fullness and sometimes itchyness/hotness in both ears, occasional earache, feeling stuffed up permanenlty (mucus in the  back of throat, loss of smell, dulled hearing).

I have tried nasal sprays, nasal drops, decongestion tablets, prednisolone (steriods) and gluten/dairy free diets all to no avail. 

To put it mildly this condition has ruined my life. My ETD has caused severe anxiety which has led to me dropping out of university and breaking up with my longterm partner. Somedays I manage to keep a positive outlook on things with the hope that things will improve soon. other days I become completely overcome with emotions and  go to sleep hoping not to wake up.

I have a hearing test in two days with the NHS which i'm unbelievably anxious for. I'm also hopefully seeing a ENT doctor sometime in June. 

I'm mainly writing on this forum out of sheer desperation. My parents have told me never to google sypmtoms as it would just exacerbate my fears but I don't know where else to turn to. It's a very lonley feeling having this condition that you can't properly explain to anyone who is unaffected. 

Thanks for listening and I wish you all the best.

Alex

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  • Posted

    I just started acuouncture for tmj /tmd to see if its possible to calm this. I only went once, got sick so i have to wait till im better to go back. But they told me id know in five visits. I see a very experienced acupuncturist. Was taught in china and been doing this a ling time and works with tradional chinese medical doctor trained in china and here in Amercia. So i do believe what they say. They make no promises. Sometimes you have to think outside the box to find answers and helo. Im 50 not 20 but i know very well the jaw and muscle can easily press agaunst the eustatian tube fir some people. Just how they are structured.  

    Inwill say I know  hiw you feel and it is awful! Do not give up. I hate it all. But i am hooing the acuouncture helos. Statistically it does show promise for tmj, for ear issues and for most everything, they have been using it for 5000 years so it beats out the ent whinhas been around for maybe 60. Thats there medicine. Thats what they use in their culture, their hospitals and in their healing. But be sure you go to a good one. Not a spa. This isnt a son thing. 

    Mine is covered by insurance, some are and some are not, costs vary. There were two too,rated in my whole area and worked with DRs. Thats it. So i chose one of them.  Well well worth the try. It is real medicine. The needles are hair thin I was shocked i didnt mind. Dont move when they are in you will hurt if you move lol. Very fast lesson i learned. 

    I will let you know if this works. I got sick so delayed the acuouncture but i restart within two weeks.  What you did describe haooens from the jaw muscle pressing the nerves and the tube itself gets pressed and its so tiny and thin so ewsily effected. A while back i had something similiar and i was lucky an ENT doctor and i got along and he exolained it all to me with diagrams. No other ent i have ever seen even mentiined it. There are other causes but this is the one im am chasing right now. The acuounturist felt they are related as well. And nit because i said anything either thru an exam. And they know where tomoress and what to look for. 

    Do not get too emotional because maybe just maybe there is a way through this, but you have to try stuff out and see.  No meds involved just drinking twomliters of water a day. Acuounture  five cinsecutive times maybe at keast once a week and toull know at the fifth visit. 

    Here they also try botox injection into the jaw. But thats a three month thing and botox isnt what i am looking for. It  paralizes nerves for about three months, not my thing. But an option too. 

    Good luck. No you shouldnt google symptoms. The goal here is help. There has to be an aswer here. 

     

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  • Posted

    Alexwolf, many on these forums understand your condition and feel the same way. Some of us have gotten better and some haven't..Can i just say to you..don't give up. Drs are learning more every day about ETD and are coming up with new ways to treat it. Try to be patient... believe me, i know how hard that is, but I truly believe you will find an answer. Its a weird silent disease that no one can relate to except those that have it.  I am so sorry you are suffering...

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  • Posted

    Morning Alex,

    That's good you're in England, me too.  Firstly stop panicking.  If you'd have read many of the posts on this Forum you would see many of us suffer exactly the same.  I too felt like you and wondered if it would ever go away.  I've now been suffering Eustachian Tube Dysfunction since the 1980's.  Mind started off from allergies.  Sadly, I suffered Pneumacoccal Meningitis through this condition, however, this is a very rare occurence, I was extrememly unlucky.  I was taken off the Augmentin antibiotic, which was trying to sort out the infection in my ear, that's when everything turned nasty.  I still to this day suffer ETD, clogged ears, tinnitis, sinus issues and allergies.  Since the meningitis I see my ENT consultant twice yearly.  My ears get so bad I regularly have a perforated eardrum in the left ear.  Because it's such a tiny hole all of the mucus doesn't manage to drain away, so he microsuctions it out for me....I have had this procedure done now approx. 7 times in the last few years.  Since Christmas 2016 I had a particularly bad episode that dragged on for months.  I continually tried to pop my ears by pinching nose together and blowing, which ended in a perforation.  I know this isn't good to keep performing this maneuver, however, my ears felt so terribly blocked and after everything else all failed I simply had to keep doing it.  At least having a perforation my consultant was able to suction all the horrible muck out, which he tells me is like chewing gum, so how would that ever clear without intervention.  I have recently finished a 20 days course reducing method of Prednisolone and everything is wonderful at the moment.  I have taken them before, but only every other year, as they aren't good to keep taking (side affects)  I find mine have to be a long enough course for them to make a different. A lady whom I've friended on here who suffers the same was given a weeks course, which she found no good.  When the ears get so bad a week just isn't long enough and people will find the problem is the same.  I've even regained my sense of smell and taste, which I lost years and years ago.  My ears are clear and sinuses are good too with no daily sinus headaches.  Because I suffer sinus quite badly, bad congestion and allergies, I know it will all build back up again.  But for the moment I'm getting some relief from this awful condition.  No one knows how bad it is and the way it affect our lives unless they suffer it too.  If you haven't been prescibed antibiotics, maybe you should ask for some, if you are suffering from earache too, there could be an infection present....always best to protect yourself from any potential bacteria.  When mucus is left to sit in the eustachian tubes, it can turn nasty.  I've tried absolutely everything out there.  Sinus surgery where polyps were removed.  I've bought a couple of machines to help eleviate the allergens, at great expense.  I use NeilMed (from Boots) Nasal Rinse and use it every morning.  I use Flixonase Steroid Nasal spray twice daily and Citrizine antihistamines daily.  I've tried Accupucture and Reflexology, all to no avail.  Someone on the forum is trying a diet leaving everything out that could potentially be the culprit for this problem.  A couple of ladies on here have copied my message to show their ENT consultants, to show what can happen if this condition isn't taken seriously.  I, sadly, lost the sight in my left eye and my hearing is down in my right ear and I'd hate for this to happen to anyone else.  There is also a procedure called Balloon Dilation that someone on the forum has had done, successfully, so you could ask about that too.  Most of us that suffer with the tinnitus I think is due to the clogged ears, unfortunately, even after taking the Prednisolone I still have it, but it's a lot quieter (at the moment).

    I'm hear for you to talk to if need be.

    Which area of England do you live in?

    I wish you the very best of luck with your appointment.

    Kind regards

    Anne

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    • Posted

      Me again Alex,  I forgot to mention, that the Prednisolone has cleared all the inflammation up in the eustachian tubes too....if they are inflammed, that too will cause a problem for drainage.

      Anne

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  • Edited

    Hi Alex I feel your pain. ETD has ruined my life as well. I have had it for only 2 months and have lost 10 pounds during that time. The stress is unbelievable. I will never be the same again. You mentioned you sometimes have itchiness and hotness in both ears. I was so terrified with this symptom. I had a warm feeling in both ears and kept going to my private doctor to check if there is an ear infection! Nothing is ever infected so my fammily just blows it off. My hearing test is normal thank god and tympanometry shows no pressure. Probably because my ears pop every time I swallow or yawn. This doesn't alleviate my stress however. I also have balance problems with it constantly and this is the worst symptom. It’s insane. My life is just standing still I barely have enough strength to make it through the day. I have wondered over and over if this will kill me. I just want you to know you are not alone and we are all suffering silently. This condition is insane and difficult for people to understand.

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  • Posted

    Thank you all for your kind words. I have read a bit about acupuncture but have always been a bit sceptical about those sorts of things. Do let me know how it goes though Lisa! Honestly at this point i'd do just about anything to get my life back on track. Anne i'm so sorry you have suffered for so long. I can't imagine how hard it must be for you. I'm actually currently located in Scotland near Inverness. The prednisolone hasn't done much for me sadly, aside from giving me acid reflux. Needsomehelp26 I truely hope you recover soon. I remember how distraught I was when it first started. I almost stopped eating entirely and couldn't bare leaving the house. Does anybody know if a programme of strenuous exercise could help? I used to be very active before all this started but have had little motivation since. 

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  • Posted

    Hi Alex,

    I have your similar symptoms, all of them except, " itchyness/hotness in both ears, occasional earache" but I have everything else. I've had them for about 16 months now. Mostly on my left ear but occasioanly I get them on my right ear too, but not as bad.

    My question to you is, how do you know you have ETD?

    I've seen four ENTS and all four say I have tinnitus due to minor hearling loss. Three audiologists say that my hearing is fine and within normal range.

    I have negative ear pressure, it's ranged between -15 to -50, but the ENTs say it's not enough to be considered ETD.

    My dentist says I have mild TMJ on my left side, which is my worst side. In addition, I'm allergic to trees, grass, weeds, molds, dust mites, feathers, cockroaches, cats, dogs, etc.... 

    So, this question is for anyone else that might knpw, can someone have noise-incuded tinnitus and have it cause the same symptoms as ETD? Or maybe I have noise-induced tinnitus in addition to allergies/mild TMJ causing my ETD symptoms?

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    • Posted

      HI dymaz. I haven't actually been officially diagnosed. My GP said he was fairly certain that was what it was and my symptoms tend to suggest ETD but I could be wrong. I'll have to see what the ENT doctor says in June. 

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    • Posted

      Yep, all of the above.  If you've been suffering from blocked ears for months I would say that you drfinitely have Eustachian Tube Dysfunction.  It sounds as though it could be caused through allergies.  I too suffer this problem and have done since the 1980's.  Are you taking a daily antihistamine ?  I have to and they do help.  A NeiMed Nasal Rinse daily is good to use too.  Not too sure how upper TMJ can cause ear blocking !!  Maybe a very deep filled filling could possibly do it.  I suffered TMJ on lower jaw....dentist was a big over zealous when pusing down on jaw.....struggled to open mouth for over a week, but it went off.  I'm pretty sure your problem is all allergy related like mine.

      Anne

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